Not my partner, but a lot more than friends. Anticipatory grief.

[Steve79]

1 minute ago, RN-Nix said:

@Steve79you will cry many many more times. As hurtful as it is that's a part of grieving. I wish this was just a period that we have to go through and then we make it through and it's over and our loved ones are back with us. I know ....wishful thinking . Don't feel embarrassed. The hospital didn't give up on her care so why would they not do a scan? Hopefully someone will tell you the results. Please try to call her later if you don't hear from her. Keeping you in my thoughts.

I will. There's not been a day yet this week where we haven't eventually spoken to each other. We've connected each day so far, somehow or other. Trying again now. 

 

[RN-Nix]

Ok great!!!!you definitely won't regret trying no matter how minimal the connection may be. 

[Steve79]

Oh dear, I've tried 7 times throughout this afternoon and evening. It rang through to answerphone each time, and S hasn't rang back this time. This hasn't happened yet. 

In her haziness, I hope she understands why I haven't been able to see her this week (positive covid). I really hope that reason stuck in her mind, and she doesn't feel abandoned. And that if she does pass before I get to her, she forgives me in her heart. 

 

[Canadagirl81]

What is her sister saying? Who is actually there at the hospital with her? 

[Steve79]

Her sister is in the same boat as me, and has covid. The hospital allow 1 visitor per patient per day for 1 hour. You have to ring and book your slot and show up with proof of negative test. So we're not a million miles away from the days where people were dying alone early in the pandemic. S receives visits daily, usually around 2-5pm from various family members, but is otherwise alone the other 23 hours each day. At this minute, nobody would be with her. 

I'm going to try once more, then contact S's sister. 

[Canadagirl81]

What an awful situation. So sorry. 

[Steve79]

As far as I understand it, even the hospice ward operates those rules. This is why it's so important for me to get negative, and get there, because it could be the last time I ever see her. This is why I'm a bit frantic, and posting here lots. I'm going a bit out of my mind with it. 

[Canadagirl81]

I'm struggling so bad right now, beside myself actually. I hope you are hanging in there.

[RN-Nix]

@steve79 there should be another family member who is going to see her.  I believe the sister holds the answers you need.  Stay encouraged and please keep us posted. 

[Steve79]

Today was the first time I couldn't get through to S at all, despite ringing 8 times through the day. I rang her sister instead and she said S is getting weaker, is mostly asleep all the time now, and didn't have her CT scan as too weak. She said she's hoping to get more answers from the hospital tomorrow. 

[KayC]

22 hours ago, Steve79 said:

I even forgot about the situation for a short while. I felt totally like my old self. This unnerved me, and I didn't trust it one bit.

 

22 hours ago, Steve79 said:

I felt a huge wave of sorrow creep up on me. It lasted 2 hours, and there were many tears throughout my walk. Then it subsided for half hour, but now it's crushing me again and again

That you can feel such polar opposite feelings in such a short span of time does not surprise me.  Your brain, your very body, is doing it's best to grasp what is happening, but it's too much to process at once, it can take quite a while for us to absorb it, it makes it's attempts, back and forth between denial and realization, like were tossed by a tempest!

I'm sorry you are still testing positive for Covid, I understood the quarantine period is five days for Omicron, it should be relinquishing soon!  Perhaps today?  I am glad you got to talk with her sister, it'll be interesting what they learn from the scan, but most of all just to see her again!

 

 

[Steve79]

Thank you for your post KayC.

I tested positive today (day 7) but the test line was quite faint, and i'm symptom free. I'm betting on it being negative tomorrow, so I rang the ward and booked myself in for 2pm tomorrow (Tue). Fingers crossed. 

Unfortunately I've rang S 4 times today, each time it rang to answerphone, just like yesterday. So she must be so out of it, poor S. 

I hope she knows I'm there tomorrow, if I do actually get to go. I'm feeling optimistic. 

[Steve79]

Dilemma.

I just got off the phone with S's sister. She said S is now on morphine and the hospital are stopping her cancer treatment, and giving end of life care. 

I'm booked to visit S tomorrow. Her sister was on a video call with S earlier. She said S isn't S anymore, has completely lost her sparkle, and is hardly talking. She also said S said she doesn't want me to see her like this, and to pass on a message to me: that she loves me. 

The thing is, I promised S I'd go see her one last time, and asked her to hold on til I tested negative, and could get there. Now I can. 

I spoke with S's sister, and she could see both sides, and left the decision to me. She said I could perhaps go for 5 or 10 minutes, and say goodbye.

I've made the decision to go, but feel deeply apprehensive. I won't see the S I knew, and worry it could do both S and me emotional damage to see each other. Yet at the same time, I think we need one last proper goodbye, for the sake of proper closure. The last time I saw her was through a 6 inch gap in a window 2 weeks ago.

Opinions? What should I do tomorrow? Go, or not? 

[Canadagirl81]

@Steve79 I can't tell you what you should do, I can only guide you to follow your heart. You don't truly know how you will feel about seeing her until you are there, seeing her. Personally, I am comfortable regarding death, always have been since I was little and so seeing people who are very sick or have passed away has never bothered me. Seeing Glenn in his open casket I knew in my heart that was just his vessel and not actually him anymore. It doesn't haunt me which I'm really thankful for. I don't know how you will feel but I do wonder if you will regret not going if you don't. Tough call.  I will say if I were in your shoes, I would be there. I'll be thinking of you both. 

[Steve79]

I would definitely regret not going. But it will be heart breaking to go.

I might have to post on here tomorrow night. I know it's going to be the most emotional day of my life. But the closure is very important. 

[Canadagirl81]

It will be heartbreaking regardless so I think going is the best choice. We will be here. 

[RN-Nix]

@Steve79 I thought about not going to the wake for my love because I didn't get to see him in the hospital which I wished I had. I only had the opportunity to see him in a casket. I kinda feel that things worked out the way it did bc he wanted to protect me from seeing him at tge end but oh how I WISHED I was there.  Please consider going . I believe you will regret it if you pass up the opportunity. Regardless what her outer appearance is please talk to her. I don't care what anyone says hearing is the last to go and I will forever say it. When you are in an unconscious state everything is hazy and your under a "plane " where you want to respond but you can't.  Talk to her, let her hear your voice. Don't let not going be something you regret later. I'm happy you have this opportunity that you've waited on. You are in my thoughts.

[Steve79]

Thank you @Canadagirl81 and @RN-Nix

I wanted to get others' opinions on this, as S's wish is for me not to, yet I think I should, and I have no experience in matters quite this delicate on this subject. 

I'm looking past S's body. I know cancer has decimated it, but I know it's only her outer shell from this life, here on earth. I know S's soul is still firmly intact inside her. That's who I'm going to see tomorrow. 

My mind is made up. I'm going. 

[RN-Nix]

@Steve79When I looked at my loves body in the casket it was strange...what immediately came to my mind is "he is not here" it's just his shell...people kept telling me to touch him and I could not ... That's why for days I would go to work and cry "looking for him" but I was looking for his soul... I'm happy you are going . You won't regret it.

[KayC]

We can't speak for you or advise you but if it were me, I would go, I know I would always regret it if I didn't.  I had that choice taken away from me when my husband died as they threw me out and locked the door (he was having a heart attack).  When four doctors came and found me praying in a little room, they didn't have to say a word, I knew.  I remember thinking, "So this is what a military wife feels like when they come to the door...."
My heart goes out to you, either way, I know this is hard.  Please come here when you are ready.  I will be praying for you.

[KayC]

15 hours ago, RN-Nix said:

people kept telling me to touch him and I could not

I did touch him after he died...it was a cold empty container that used to house him...it was not "him."  It resembled his body, but OMG how lifeless!  George was so full of life!  Each of us handles this the best way we know for ourselves, no one can tell us what to do, how to handle this.

[RN-Nix]

@KayC I used to rub his cheek and when I looked at him in the casket I just felt in my gut that "he" was not there. I can't explain it. I just want to remember the softness of his cheeks and warmth of his skin. I don't believe we as humans should have to go through this never ending torture of grief. It's just too much. If the physical anguish doesn't weigh down on you the mental anguish does. 

[Steve79]

I met S. Poor S looked pale and weak, and was sleeping when I arrived. I held her hand, and she half opened her eyes, clocked my eyes, didn't react, and shut them again. So I began softly talking, and she opened her eyes again. I asked her if she knew it was me, and she said yes, and we had the best hug we could given the circumstances. We haven't hugged for 7 weeks. I couldn't believe I had S in my arms. She began waking up and we had the best hour. Her fight is totally gone, but her spirit is still there, and her mind was still quite present. It was totally different to the torment of using the phone. We understood every word each other said. 

We laughed a bit. She drifted off the conversation a little bit here and there, but kept track pretty much right through. She got tired in the last half hour, and struggled ticking which selection she wanted for lunch and dinner on the following day's menus. I helped her with those. I wiped the corners of her mouth. I held her hand. At times it was like being with a baby. I told her that if I don't see her in this life again, then she should visit me from the other side. She said I'm never getting rid of her. I asked her to flicker my lights or knock things off the shelf. It was a very tender moment when we spoke like that. There was something beautiful about it, and not all all dreadful or scary. 

Towards the end of the hour we hugged again, and I kissed her on her hand, her lips, and her forehead, tenderly. There were lots of "I love yous". The moment was tender. I'm incredibly lucky to have had this visit. I lowered her bed back to a lying position, said goodbye, kissed her one more, and she was asleep before I got my coat on.

When I left, I wasn't in the gut-churning anguish I'd imagined. Quite the opposite. I felt an enormous weight lift of me. I felt as if closure had come, real satisfying closure, for both of us. I walked out of there an entirely different man to the one who walked in. I know when she departs, all I said will be in her heart. That she will always ALWAYS be in my heart. I feel as if it released me from something, and I'm now choosing to get on with life again. Life goes on. This grief cannot define me, and S would detest that. I have other relationships to continue nurturing. 

S is being transferred either to a hospice, or to her home with 24-hour care by, or on Friday. So i might get to see her once, twice, three times or more yet. If I do, I shall be happy friend Steve, and not heavy hearted. It's what S would want. Everything that needs to be said has been said. 

[Canadagirl81]

My heart is bursting with happiness reading your words Steve. I am so so happy that you got to spend time with her and had such beautiful words exchanged. You got to love her, kiss her and hug her.....what a gift. I hope you get to see her many more times. I'm so glad you went!!!! Happy friend Steve....just beautiful. 

[Steve79]

Thank you Laura. This past week has, probably literally, been the worst of my life. S's rapid deterioration, then going in there, me stuck here with Covid, phones were useless, touch and go with the covid testing. And we got this beautiful gift at the end of it. I do consider myself blessed. I know so many never get, or got that chance.  

[RN-Nix]

@Steve79.....and there you have it. 

[KG21]

This is the best news today! So happy you got to have some time with S. 

[KayC]

Steve,

I am so happy to hear how it went!  That you got to connect with her, say what you wanted to, exchanged good moments, got to kiss her, that she gets to be in peace knowing your love fully, it will carry her, just as it will carry you.  I am beyond ecstatic for you both!  

[Steve79]

@RN-Nix @KG21 @KayC

Thank you all. It means a lot to me.

Today has been a bit different though. I had a major wave earlier, and broke down, and even wailed openly. I don't think I've ever wailed before this grief. That's a new one for me. It shows the depth of pain I guess. 

Getting through it one hour at a time. 

Back to work Friday. I'm looking forward to that, just for some distraction. 

[RN-Nix]

Yes 1 hour at a time. Work will definitely be a distraction.  

[Steve79]

1 minute ago, RN-Nix said:

Yes 1 hour at a time. Work will definitely be a distraction.  

Part of why it's been very painful this week is because I've spent the last 11 days and nights off work, and mostly isolated at home because of covid. But that's all changing. I'm not letting this grief define me. 

[RN-Nix]

No it won't define you but it has a way of finding us when we think we are moving forward.  I'm glad you kicked covids bahind. I'm tired of hearing covid . 

[Steve79]

Just now, RN-Nix said:

No it won't define you but it has a way of finding us when we think we are moving forward.  I'm glad you kicked covids bahind. I'm tired of hearing covid . 

Me too. I was glad to see my local supermarket / grocery store has removed all the plastic screens between the self-service checkouts today. They've been there for exactly 2 years!

[KayC]

I heard on the news that if you've had Covid you have built good immunity against it, not to say it's not possible, but they also said over 90% of those who died had underlying conditions.  Two years ago today I first heard about it.  They knew sooner but didn't tell us.  It hit the news here in OR (US) on St. Patrick's Day..

Oh yes, the deep wailing sobs, most of us with grief have experienced them.  We are no stranger to them.  I rarely cry now, I think I've run out of tears.  

I'm glad for work...it helped a lot when my George died, although it was hard to focus, but then I lost my job, that was a very hard time.  Wasn't sure if I'd end up homeless!  They gave you unemployment for six months minus waiting week (you get 2/3 of your income five quarters back, four quarters ahead, determine weekly rate).  When you've already had your income cut in half, it's hard to live on that and esp. knowing time is running out for that even!

I'm not sure they'll remove the plexiglass they use in stores, restaurants here, owners paid to install it and may want to leave them up a while to see what happens.

[Steve79]

 

@KayC Ouch! You lost your job in the middle of grieving? I felt that. 

Just an update, S is still with us, and should either be in a hospice, or home with 24 hour care by tomorrow - the operative word is should. I couldn't guess how much longer she has. I have had no contact since I visited her in hospital 2 days ago. I sent text messages, but any kind of phone contact is out of the question now. 

I'm in quite a fragile emotional state. I can go about daily business, but break down once I return home. My tears come rushing out as I walk in my door. I shut it, then sit and sob. I can still hardly eat. I saw one of her friends today. She's a driving instructor, and I saw her giving a lesson. I beeped and waved, but seeing her instantly got me sad. They were always together and are close. I wonder how she's feeling.

 

 

 

[KayC]

I'm sure she's feeling the same emptiness, concern, fear you must be.  How far away is the hospital from you?  Just wondering if it's possible to drop in after work for a short time...if it's like the ones here, nothing is quick or easy about it...also the hospitals here are 45-65 miles from here.  I hate Riverbend, it's parking is in one of those places I get claustrophobia in, you go inside no one is there to greet you or tell you how to find anything and you literally walk miles from one place to the other.  It's insane.  I don't know whose idea was planning this structure but they flunked in all our books!

Continuing to think of you, the hard position you're in, no man's land...

[Steve79]

Thank you for replying. 

She's home now since last night, with 24-hour care, and no more cancer treatment. I briefly spoke with her on the phone yesterday, and she sounded very spritely, more energetic than Tuesday at the hospital, although a bit confused about the time and day etc, bless her. So I'm going over before work tomorrow afternoon for an hour (I work nights), and then hopefully again through all next week when I'm not at work. 

[KayC]

Oh good, Steve!  It undoubtedly raised her spirits to be home, I took care of my MIL at her home for three years before she died from cancer, it helps them to be in their own surroundings with people they love.  I'm glad you will be able to see her!

[GoldenRose]

@Steve79 In the midst of our all sadness and grief, the message where you described your visit with S at the hospital was just amazing. It put a smile on my face. So very very happy you had that wonderful moment with her, and I am hoping that today is another wonderful moment! We are all rooting for you from a distance and will continue to be here whenever you need to express anything!

[foreverhis]

11 hours ago, KayC said:

Oh good, Steve!  It undoubtedly raised her spirits to be home, I took care of my MIL at her home for three years before she died from cancer, it helps them to be in their own surroundings with people they love.  I'm glad you will be able to see her!

I too am so glad to hear that she is home.  One of my biggest regrets--and as you know, I have many--is that John's kidneys and liver failed overnight the night before he was supposed to come home on hospice.  They did move us to a large, private room with floor to ceiling windows looking out onto John's favorite courtyard.  It was calm, quiet, and away from all the fuss.  But it wasn't home.

I'm also happy to hear that Steve got to have a good visit with S at the hospital.  We just never know what's going to happen tomorrow, so having that sweet memory will help at tiny bit later on, I suspect.

[Steve79]

An update for anybody that's interested. S has been home since Thursday. I visited her yesterday (Sat) and today, for about 45 minutes each time before going to work. 

Yesterday she was well out of it. More so than I've yet seen. She took a few minutes opening her eyes, and her speech was little more than strained whispers. She woke up a bit more for a short while, but her thought patterns and verbalisations were fairly jumbled, often irrelevant, and incomplete. She had a look of utter defeat in her eyes. As great as it was to see her, I immediately broke down once I drove out of her street. I went to work (I work on my own in a driving job) and had 3 long sobbing sessions through my shift, feeling utterly sorrowful.

Then I went over today. I just arrived back home. S was very awake the whole time, but was less lucid than I've seen up til now. She isn't the S I once knew anymore. My heart broke at all this, and I don't know how I held it together. I nearly cracked at one point, but held off til I got back in my car. Seeing somebody you love suffer like that is something I've never really experienced. I can't describe it. I'd do anything to save her, so she doesn't have to suffer, and can enjoy life again. 

I have to update here because it's cathartic for me. One of the worst aspects of this for me is how not one friend or family member has reached out to me even once, just to ask how I'm feeling. I'm left seriously questioning my life, and all my relationships. I received lots of texts when I had covid, but complete silence with this. It's comforting that I met S's sister and adult son yesterday for the first time, and got along very well with both of them. They both recognise the importance of me to S, so have given me an open book for visiting. 

This is breaking me. I'm becoming a master of crying whilst driving. 

[RN-Nix]

@steve79 I'm so happy that you are able to spend time with her.  Remember just a week or so ago it was driving you crazy not to be there in her presence? I know it's frustrating that you really can't "save" her. just be happy that you are at least able to see her, touch her and connect with her family so you are a source of comfort for them too. Her journey is complex esp now that she is in her end stages.  What I would give just to be at my sweethearts bedside before his death but now on Sunday my spirit is low. Cry all you want to ...when things are beyond our control that may be all that we can do. Hang in there. 

[Steve79]

@RN-Nix Thank you for your reply. I know what you're saying, and I'm very grateful for spending time with her. It's just that her decline, which I can see by the day, literally, is something I'm trying to get to grips with. It's all happening so fast. 

In front of her and her family you'd never know how I'm breaking on the inside. I'm a pillar of strength for S, and a comfort for her family. But when I leave, and I'm on my own, that's where I find it unbearable. This forum is a huge outlet and a huge comfort. 

[KayC]

21 hours ago, Steve79 said:

Yesterday she was well out of it.

I am so sorry, it's so hard to witness this.  It's good to keep in mind that even if you can make no sense of her incoherency, she can still be aware of you even if she can't respond accordingly, I have seen this with people in a coma and with my mom in her latter dementia.  Keep seeing her as long as you are able, it will be of comfort to her.  Even if she can't let you know it.

So long as you can be aware of your driving and see, the tears won't hurt, if it gets too hard, pull over so you don't have an accident.  Many of us have cried while driving.  I had to pull over after leaving the soc sec office when my husband died, and the lady loudly pronounced him dead.  WTH!  Why would she do that!  What an idiot!

I'm sorry people have not been there for you, the hardest thing you've gone through!  As long as I live I don't get people.  I just don't.  heir failure to empathize shocks me.  Every friend we had disappeared immediately after George died.  I would not have expected that.  Yes, grief can rewrite our address book, just at a time when we least need it.    Again, I'm sorry this is your experience.  I made a new best friend after George died, we were very close for ten years, before she moved out of state.  It's been seven years since and I haven't found another even close.  But maybe someday.

 

 

[RN-Nix]

@Steve79 I totally understand.  It's like i saw my guy walking talking laughing with me then I saw him in a casket ...there was no in between stage. At some point I think you will make peace with what is ...I can't say when so hang I'm there for now. My thoughts are with you. I'm also praying for your strength 

[Steve79]

1 hour ago, KayC said:

the lady loudly pronounced him dead.

Ouch! Double ouch! That's awful, really. I can only assume she's done that so many times that to her it's like an assembly worker packing their 100,000th box. I'm sorry to hear that. I actually felt a pang reading that. 

Quote

Every friend we had disappeared immediately after George died. 

Triple ouch! I'm a little lost for words. I'm learning something quite valuable about humans here. Again, I'm sorry to hear this too. I suppose one good thing to come out of grief is that it likely means you won't be somebody who disappears if somebody close experiences a loss. 

I've just returned from another visit with S. She said my visits mean the world to her. I told her likewise. We had a nice hour and we connected for most of it, on and off. 

 

1 hour ago, RN-Nix said:

@Steve79 I totally understand.  It's like i saw my guy walking talking laughing with me then I saw him in a casket ...there was no in between stage. At some point I think you will make peace with what is ...I can't say when so hang I'm there for now. My thoughts are with you. I'm also praying for your strength 

Thank you. It's a 'good' day today. I feel a little more clarity and stronger today. 

[KayC]

22 hours ago, Steve79 said:

you won't be somebody who disappears if somebody close experiences a loss. 

ABSOLUTELY!  But then I wouldn't have anyway.  I might not have known what to say, but I'd have been there for someone going through this.  I have compassion.  People shock me.  There's no wonder I like dogs and cats.  People are known to disappoint.

22 hours ago, Steve79 said:

She said my visits mean the world to her.

I know this to be true, even if she couldn't respond or say a word, I know it's true.  I've learned a thing in my life with what I've gone through.  I was 14 when my sister had her horrific accident that killed her three year old and left her in a coma for 4 1/2 months, rendered her a quadriplegic with a butchered vocal chord.  She later told us she could hear every word that was said in her hospital room, just couldn't respond.  

Years later my mom was in a dementia care unit at the end of her life, comatose.  I stroked her forehead and talked to her soothing thoughts, her eyes fluttered open a moment...I knew then she could hear me, she just couldn't respond.

The 13 years my grandma was in a vegetative state, couldn't respond, we talked to her, held her hand, brushed her hair, my grandpa visited her every day.  She couldn't respond.  I have faith she knew he was there.

Keep talking to them, loving them, praying for them, respond to them, it may seem one-sided, but it's not, that other person is there, even when they can't respond.

I'm glad you're getting this time with S.  Each time it's a gift...to both of you. 

[Steve79]

S has just passed, peacefully, at home, with her family, at 1:15am. I last saw her 10 hours ago, and she was unresponsive. 

I had the most emotionally turbulent week of my life, but also the most moving. There were seriously tender moments of intimacy, tears, and some laughter. It all felt so real.

Two days ago, on Wednesday, she was sat upright, chirpy, chatty, energetic, looking well, perfumed, then went downhill fast. On Wednesday she gave me the most spirited smile as I left. A smile I hadn't seen for 2 months. That image is scorched into my mind and will remain forever. 

I don't know what I'm feeling right now. Calm actually, and a little relieved that her suffering is over. I know it's yet to hit me proper, but I'll deal with that going forward. 

My last words to her were "I love you". I know she heard them, I know she took that to the other side. 

[RN-Nix]

@Steve79I'm so sorry for your loss. I'm very happy you were able to share beautiful, meaningful moments with her. 

[foreverhis]

@Steve79  I am so sorry you lost your love.  But I am also glad that your last words to her were the most important in the world.  It must have been so comforting to her and to you as well.  Right now you are probably in shock.  That may sound odd considering that her death was not unexpected, but it's still a shock.  It was shocking to me when my husband died, even though he had been fighting his cancer for more than a year and we had surrendered to the inevitable. 

Please keep coming here.  The members here helped me through some of my darkest days.  I hope you will find that we help you as well.